Bohring-Opitz Syndrome Foundation, Inc.
"The Best Life for All Families Living with BOS"

BOS Patient Stories

Bohring-Opitz Syndrome Patient Stories


Theo’s Journey

Theodore Mathias Bell was born on October 10, 2016 at St. Mary’s (now St. Vincent) Hospital in Evansville, IN. He was born 3 weeks early by emergency caesarean and weighed 5lbs 5 oz. He spent the next 17 days in the NICU due to feeding issues. In February of 2017, he had a G-Tube placed. The journey really began in March 2017 when Dr. Joseph Hersh, a geneticist in Louisville, KY, called to inform that Theo had BOS, diagnosed by whole exome sequencing. He referred the family to Cincinnati Children’s Hospital to speak with Dr. Bianca Russell, who he had just heard speak at a conference about Bohring-Opitz Syndrome. The next 2 years would be a roller coaster ride. Theo was in the Hospital every 2-3 weeks (31% of the time) battling cyclic vomiting and then, once the vomiting was under control, constipation. A G/J tube was place in June of 2018 In Cincinnati. Since then, a change in medication and starting a blended diet has helped significantly. Theo still has hospital admissions, however, they are becoming less frequent.

Despite the many medical challenges that Theo has faced, he continues to be a happy child. He has a very sweet and energetic personality. He loves anything with lights and music and is always smiling and laughing during his periods of health. Theo is overcoming his vision and hearing loss by working hard through his many therapies. He is now able to sit for short periods of time with some assistance and is being more engaged in active play. His next adventure will begin in the fall as he starts Pre-School at Rockport Elementary.

Theo’s Journey has been a rough one but his parents Haylee and John are blessed to have such an amazing support group. The BOS families, their home nurse Kalah, the BOS Foundation, and their own immediate families have helped so much in Theo’s journey. The shirts, wristbands, car decals, and ribbons that the foundation has come up with have been displayed throughout the year. Last year, the school that John teaches at held a BOS Day in Honor of Theo and this April the Foundation was able to give some money through their grant to help build a wheelchair ramp for Theo. Haylee and John would like to thank everyone for theirsupport and to remember that we are all Stronger Together. #BOS #GoTheoGo

Taylor GurganusComment